Tracking CCI / AAI MRI & Treatment outcomes

[perrier]

I had my appointment with dr bolognese. It seems he has diagnosed me with cci. I want to see it in writing before I celebrate too much, but he said something along the lines of your measurements being consistent with cci, and said while my response to traction is indicative of cci, and my need for a collar, that he would require further testing, including invasive cervical traction, before doing surgery. Rather conservative surgeon, but I think he really knows what he’s doing. Will also send scans to gilete.

May I ask Debored, did you have any of the symptoms which Jeff and Jen had?

 

[MEPatient345]

I wanted to report another success story from surgery that has been reported in a Facebook group for ME patients with spine diagnoses like CCI, AAI and stenosis.

A young woman in the Netherlands who was bedridden with severe ME, and also suffers from EDS, had fusion surgery with Dr. Gilete in sept 2018. She was fully bedbound, she suffered seizures, and couldnt tolerate light, sound and heat before surgery. Since surgery, she is no longer bedridden and is living normally and independently except for some fatigue, which can be a feature of hEDS and CCI, and which Dr. Gilete has told her could take time to resolve. This information came from her mother who reports her changes as “amazing”.

 

[bombsh3ll]

had fusion surgery with Dr. Gilete in sept 2018.

That's amazing, do you know what levels she was fused?

B xxx

 

[MEPatient345]

She is fused C0/T1 @bombsh3ll

 

[bombsh3ll]

She is fused C0/T1 @bombsh3ll

Thanks! Dr G's recommendation for me was C0-2 to treat the cranial settling but with advice to consider fusing lower due to very minor instability at C2-4 and risk of adjacent level syndrome. At the time I didn't really go into that as I was leaning towards the least extensive/expensive option to hopefully improve my quality of life and had seen the C0-2 do the trick for Jeff, but having spoken to another couple of his patients, I think if I do go for surgery I will take his advice to fuse lower. I just do not know to what specific level he meant for me, but if it was T1 I'd take it.

B xxx

 

[Mariah]

Don`t know quite where to put this, but seeing if anyone has any input for me here.

After reading up on these different neck issues and their co-morbidity with ME, and recognising alot of the symptoms associated, I decided to contact dr. bolognese to ask him how to go about recieving an opinion on my MRIs. I have some hypermobility, never diagnosed or even checked for it though, and I`m actually hoping to get CCI and/or similar conditions ruled out, as I would have no way of affording a surgery. I am in Norway, so my inquiry was for an opinion via mail or Skype or something similar.

The response I got just now was what I am guessing is a standard response he`s had to craft these last months as inquiries have been steadily rising, and it said: "Try cervical traction with your local physical therapist.If you obtain dramatically positive results, then follow the instructions beloyou can come here for a visit or have a videoconference, go to:
http://www.chiarinsc.com/newpatients.php
and
http://www.chiarinsc.com/telemedicine.php

fill all the paperwork
follow the instructions
mail in the CD’s with the imaging
then get in touch with Ms Pendergast for an appointment at ipendergast@nspc.com

If the traction does not provide dramatically positive results, then proceeding with the next steps is not indicated."

The problem is, I live in a small town and there are no PTs here that I know of who does cervical traction. I guess I could go to another city and try it, but will one session be sufficient as to knowing if I benefit from it? I`ve thought this whole time that dr.Bolognese will first review your MRIs before recommending any treatment, at least I haven`t read about anyone else who had to try PT before getting his opinion on the images, so I wasn`t really that prepared. I`ve read about people sending him the images and getting a written response first as to what he thinks. Will the cervial traction say anything about other types of neck problems besides the CCI? Is it worth trying with Gilete first? Is there an easier way to test than going to a PT? Only asking all these question because I have extremely limited energy, and deciding to go to another city for treatment will take alot of sacrifice for that reason.

 

[hezza]

Hi @Mariah I received the same generic response from Bolognese. And that was after he had reviewed my scans& paperwork. Had my first appt w PT today. Neither the PT nor I knew much what to do or expect. It felt wonderful while on the table actually getting the traction but that was it-soon as I sit up dizziness smacks me, not to mention PEM from simply making it too an appt & having to explain this illness to someone new... the PT & I decided an email asking for clarification from Dr B was in order. Got an immediate response saying that “what matters is DURING the traction. If it felt wonderful then you’re in.” Therefore one session could be enough for his purposes.

It was not easy to find a good PT in my small area either but I did find a really good one. I get the idea you’d rather rule this out than in. But if surgery is in your future it will pay to have found a good PT in your area bc you will definitely need them post op!

Hope that helps!

 

[sb4]

To those who have received traction from a PT, what does it involve. I recently laid on a table and got my brother to pull as hard as he could on my skull, moving it up and away form the spine and I felt nothing.

I have read somewhere on here that for someone with very tense muscles on the neck it is required to push down / squash first to relax the muscles.

 

[Joly]

Hi @hezza I was wondering, did Dr Bolognese give you any feedback on your scans and paperwork before recommending the traction? Or does he not review the cases at all until after traction has been performed? Thanks.

 

[Mariah]

That is very helpful @hezza , thanks for the input!

I`ve googled a bit and found a place with PTs and chiropractors in the neighbouring city who lists traction as one of their methods. I`ll communicate via mail to confirm. I have friends I can stay with while there, so the whole thing will be less exhausting than going somewhere far. Looking forward to see if it gives results or not. My guess is I will have some relief either way because my neck muscles have been like "sement" according to a PT I went to before, for 10 years. Having a hard time keeping my head up, but as I understand that can have multiple causes.

I was wondering that too @sb4 ! That`s why I`d rather go to a professional than having my bf or friends do it.

 

[Malea]

I had my appointment with dr bolognese. It seems he has diagnosed me with cci. I want to see it in writing before I celebrate too much,

Do you know if he will give a written report with measurements to every patient who had a video conference/ appointment with him?

 

[StarChild56]

Please be careful everyone; imho please don't have anyone pull on your head or neck...it can be dangerous. At least have a trained PT do only very gentle manual cervical traction.

 

[Strawberry]

Please be careful everyone; imho please don't have anyone pull on your head or neck...it can be dangerous. At least have a trained PT do only very gentle manual cervical traction.

I second this!

.....pull as hard as he could on my skull, moving it up and away form the spine and I felt nothing.

I hope you are okay. Getting about 3 minutes gentle traction from a trained masseuse made me go backwards for a few months. Actually, I still haven't fully recuperated to where I was before I had it done.

 

[hezza]

Hi @hezza I was wondering, did Dr Bolognese give you any feedback on your scans and paperwork before recommending the traction? Or does he not review the cases at all until after traction has been performed? Thanks.

Funny you should ask, I emailed him to ask “is this (the instruction to see a PT for cervical traction) in response to my initial inquiry or in response reviewing my scans & paperwork?” His response: “Both” That was it, that was the most feedback I’ve gotten on my scans, lol. His response indicates that he did review them tho. Guess I will learn more when I have the videoconference. Seems that, yeah, he is adjusting as he goes along, as this thing is taking on a life of its own.

 

[Joly]

Thanks @hezza , I thought that might be the case.
I have my upright MRI tomorrow and am sending the scans to Dr Gilette, if they come back with something I was planning on seeking a second opinion from Dr B as I am in the UK and he's the only other Dr who does distance consults but I don't know if I can afford another private MRI if he won't look at it without having done traction, which I'm very wary of as my neck is a big problem area for me and I'm anxious it will make me worse.
But we'll see, I'm getting ahead of myself anyway!

 

[sb4]

I hope you are okay. Getting about 3 minutes gentle traction from a trained masseuse made me go backwards for a few months. Actually, I still haven't fully recuperated to where I was before I had it done.

Thanks for the concern but it has caused zero difference at all, during or after. Could mean I don't have CCI, not sure. I only did it because I haven't noticed a difference with different forms of traction, nor with moving my head in different positions, so obviously I wouldn't recommend everyone to do this.

 

[bombsh3ll]

Funny you should ask, I emailed him to ask “is this (the instruction to see a PT for cervical traction) in response to my initial inquiry or in response reviewing my scans & paperwork?” His response: “Both” That was it, that was the most feedback I’ve gotten on my scans, lol. His response indicates that he did review them tho.

He didn't even suggest trying traction for me (and I have been diagnosed with isolated vertical instability aka cranial settling by Dr Gilete), although I did not let him know that I was seeking a second opinion as I wanted it to be completely unbiased.

B xxx

 

[bombsh3ll]

I`ve thought this whole time that dr.Bolognese will first review your MRIs before recommending any treatment, at least I haven`t read about anyone else who had to try PT before getting his opinion on the images, so I wasn`t really that prepared. I`ve read about people sending him the images and getting a written response first as to what he thinks. Will the cervial traction say anything about other types of neck problems besides the CCI? Is it worth trying with Gilete first? Is there an easier way to test than going to a PT?

He REALLY should be looking at any scans and information sent by the patient before recommending traction to anyone. There are certain instances in which traction can be very dangerous, if you were to have certain rare conditions. I would assume although I cannot be certain that he has to be looking at anything sent before recommending any course of action, for medicolegal reasons.

B xxx

 

[Mariah]

I agree @bombsh3ll. I did not send the scans first though, as I have them downloaded digitally atm and not on a disc, I only e-mailed to ask how to go about getting an opinion from him. I was unsure which of the two doctors that does distance consultations to choose, but chose him as he seemed most conservative of the two, and I generally like that. But it does not seem he thought of the rare scenarios you mentioned.

 

[MEPatient345]

Hi all, I just got diagnosed by Gilete — CCI and AAI. Possible candidate for C0 to T1 cervical fusion...
I don’t know how I feel exactly. I think I need to hear a second opinion from Bolognese. But.. progress.

I cast my vote above — now it’s at 60% yes and 40% no. But, is it 100% yes with Dr. G? Anyone here gotten a no from Dr. G?